Hi I’m new here.

Hi Juejue66

Welcome to the Online Community and the pancreatic cancer forum.

I am sorry that you have not yet had a response to your post but sometimes it can take a few days for someone who has experienced similar, to see it and reply. By me responding it will hopefully bump your post. 

I am sorry to hear of your pancreatic cancer diagnosis and surgery. I had chemotherapy myself and understand that the side effects can be pretty bad at times. I know what you mean about feeling a bit lost when treatment ends. For me for 7/8 months life seemed to involve hospital appointments and treatments etc.

With any eating issues and losing weight as you are then it is important that your team are aware. Have you had a referral to a dietician or similar professional? I understand that it can feel like ticking boxes at times. 

Tips for diet for pancreatic cancer and weight loss - Pancreatic Cancer UK

I found this information and wonder whether any of these peoples suggestion may help in the meantime. 

I also found this on the Macmillan site and may also be of help.

The building-up diet - booklet | Macmillan Cancer Support

We do also have the Support Line and it may be worth giving it a call and talking it through with one of the nurses. 

I wish you well and hope that you can find answers soon

Jane

I was Whippled in April '23 followed by chemo up to December.. By that time I was 70kg (I never want to be that light again!) I reckon it took me a good 3 months after chemo to start getting some weight back on. I found walking after I ate really helped digestion/bloating & fatigue and I used to do a gentle yoga session (for digestion) every morning. By June '24 I'd regained about 4kg so I engaged a PT at the gym who's done a lot of rehab work. Over the last year I've put another 5kg back on regaining muscle mass I'd previously lost & feel confident enough to get back on my road bike.. Good luck

Hi.

I had whipple surgery 3 years ago  and completed 5 of a 6 month course of chemotherapy. 

I am a pensioner but I  tried to walk as much as possible when I felt able. I listen carefully to my body and eat sensibly,  no alcohol or big meals.

Early on I ate very little, mainly small snacks of whatever I could stomach and took anti nausea medication. Gradually things do settle and anything to distract attention whilst eating usually works even now.

The weight comes on gradually as you get into some sort of a routine and learn to stress less about it.

Believe me, you will progress but be patient, you've made it so far and many haven't. 

Good luck and enjoy your new chance of life.

Hi JueJue66

I'm so sorry to hear you're still having such a rough time. I had my whipple 28.2.24, then 12 Folfoxin (gruelling I know!) I'm also struggling with maintaining weight. 

I've recently discovered that I had been told an outdated way to take my creon. I was told to take it before my first bite then half way through. Updated research says to take 2 bites then space creon out through meal according to fat/ calorie content. This has slightly improved things for me. Apparently there is also an alternative to creon and this is working better for my friend's husband. 

I also take ondansetron for the nausea. It would be worth asking your hpb team or dietician for help / investigation with your vomiting. 

I am also trialling ensures, vital and peptisip, none are working currently for me but might be something for you to ask about. I am currently waiting for a referral to gastro as my current dietician thinks my actual issues are their department, again might be something you want to discuss with your team.

Wishing you all the best on your journey to recovery. 

Sorry to hear you’re having issues after the whipple. My. Experience was not pleasant at all,  in the hospital 14 days and came home with a wound vac that I carried with shoulder strap for a month.  I had to force food down for about 4 months  did 12 rounds of chemo they gave me a shot in the stomach each time for nausea that worked well and but was pretty painful but worth it to not be sick. I recently got my first scan after treatment and all clear. I hope things start looking up for you soon,send hugs your way